I’m on watch and wait. My haematology appointment was yesterday. Tuesday I had very bad pain in my rib cage and the ambulance crew took me to A&E. Doctor sent me for a CT scan saying it could be a kidney stone. When he came back to see me he shut the door and sat on my bed. I knew something must be wrong. He said no kidney stones but we found something else. A 6cm mass in my abdomen, also nodules on my liver. Oh joy. He said my haematologist would talk to me, Thursday, yesterday. She said I’d need an ultrasound on my liver and an ultrasound and biopsy on the mass. Here was me worried that I was about to start treatment instead of another blow. I know there are people out there a lot worse off, just shaken. I’ve had breast cancer, skin cancer CLL and now this. I feel like giving up but my son gets married in November, I want to be there. Give me strength.
CT shock: I’m on watch and wait. My haematology... - CLL Support
CT shock
So sorry for this very difficult news. You sound like quite a strong person and resilient. This is another blow but try to take it day by day and don’t go too far ahead of yourself.
Of course I’m saying this as I’m not walking in your shoes !
With respect ,
Sending support and care your way.
Thank you. I needed to get it off my chest and I know the group are good listeners. Perhaps by tomorrow I’ll feel stronger and more able to cope. I’m usually able to handle things better.
No need to pressure yourself to do better.
Take your time. We’re here for you !
❤️
As you’ve learned with CLL, for whatever is going on with your new unfortunate discovery, try to find a specialist and in addition, one that will collaborate with your CLL specialist.
If you want to be strong everywhere else, here is where you can howl to the moon.
yes you are so right, I can howl to the moon. Yesterday I felt I’d just had enough and didn’t want to know. Then I thought about the Wedding and I have to be there he doesn’t have any other family going. Only his Mum. I need to be strong and go ahead with the biopsy and tests and if necessary treatment. Just not looking forward to the circus. 🤡
Agreed.
I take it that these concerning results are from your first CT scan? Given your CLL diagnosis, the mass could be a cluster of swollen nodes - hence the involvement of your haematologist, who has taken the appropriate next steps. Please keep in mind too, that the trigger for starting treatment with respect to node size, is greater than 10cm in the longest dimension, significantly bigger than the 6cm from your report. The actual volume goes up as the cube of the diameter, so a 10cm spherical node will be over 4 times the volume of one 6cm in diameter.
With respect to those liver nodules, many people have them and they are often benign. Over 5 years ago, I found I have several along with one in my lungs, thanks to my trial CT scans. My doctors haven't expressed any concerns.
Early detection is important if treatment for other than CLL is needed. You've survived earlier scares and understandably, these have you thinking the worst. What's important is that you now know what's there and you'll soon know what, if anything is recommended to ensure you see your son enjoying married life.
Neil
Thank you Neil, I knew I could rely on you to explain things. I did ask my Consultant if the mass could be anything to do with Lymph nodes and she didn’t seem to think so. She thought it was nothing to do with CLL and asked me if I still had my ovaries after my Hysterectomy when I was 39. I found out yesterday that yes they did leave my ovaries. My Consultant is not a CLL specialist but does do research on it. She said the mass is difficult to get at and they will have to go through my vagina. I think she’s passing me over to the appropriate department. I’m usually quite strong and just deal with things but this threw me and I just felt I had had enough, but then thought about the Wedding and decided I have to be there. Again thank you.
Neil is the best! I’m so sorry you have all this fear and worry and I wish you the very best outcome of the tests. You have been so strong before and you can do it again for the best reason - the Wedding. Xx
Thank you. This site is inspirational. I appreciate everyone on it.
Hello 21bedlam21
I can echo what AussieNeil said. I had CT scan last Monday, which showed my massive lymph nodes had shrinked and my lever was smooth. Now on to scope and PET scan. I have been through this before and came out alright. Blessings.
Thank you. Wishing you all the very best.
I hope you can get some comfort from Neil's wise post. My thoughts are so much with you. Cancer is no joke. It is my husband with CLL. I had a bout of endometrial cancer 3 years ago, it leaves us always concerned about what could come next. I wish you only good news.
That is such a good calming reply. You are amazing.
Thank you, I feel more positive today, just had a wobble yesterday.
Neil you are such a resource in this group. I really hope this is the case and what they are calling is mass is just swollen nodes. There is so much in life to deal with and it always seems there is just one more thing.
Yes it does seem endless. You deal with one thing and another comes along. One concern is my Consultant didn’t think the mass was Lymph nodes. So I will just have to wait and see. Thank you yes Neil is such a resource to this group. I hope someone asked him how he is doing.
Just sending kind thoughts to you, and thinking of you. The ultrasounds will help to sort out what is going on.
Yes thank you. It was just a bit overwhelming.
Hello Bedlam!
I’m sorry you have to go through yet another physical issue. Ugh.
In my own journey the issue of feelings arises.
Ive been questioning the strong/not strong description.
Perhaps a different way to think about it is that you are feeling something deeply at this time. Might the depth of feeling have something to do with your son and you being his only family? Only you will have the answer.
The overwhelm will subside and you’ll be able to think more rationally about it all.
Feeling deeply and overwhelm mean only that you are human, not weak. The journey is scary sometimes but that doesn’t mean you’re doing it wrong.
It sounds like on the physical side you have experience and know what to do about seeing specialists and getting treatments.
It’s the “this is the last thing I needed right now” feelings (which are so justified) part that might be needing a big self hug right now.
In any event, I send you positive vibes and a virtual hug. x
Thank you for your kind and thoughtful words. I had a wobble yesterday. Even as far as will this be my last Mother’s Day this Sunday. The sun is shining and all your support has told me to tell myself to just get on with it.
Your reply to Bedlam is spot on!
You’ve been through a lot in your past, so I know you will have the strength to get through this. Wishing you all the best and happy Mother’s Day for tomorrow x.
Dave
Thank you so much for your support. I will make the most of it tomorrow.
Sorry you are going through this 21Bedlam21, it is always the time between being told and the knowing that is the worst. I will pray for a positive outcome.
Thank you for your kind words.
I am so saddened by all your new scan results. Always remember, cancer does NOT define who we are. I am sure you feel like everything literally is falling apart and want to give up. Remember, you are a mighty warrior; I am amazed at how unbelieveable powerful you have been and are. Focus on that very special date in November. I am thinking of you and sending you all my love and strength daily, God Bless you and God Bless your family.
Thank you for support. It’s so helpful being part of this group. Sometimes easier to talk with like people going through the same thing.
Given your brief history, you sound strong and amazing. With that in mind, you are probably an inspiration to many family and friends. Try to focus on that, the upcoming wedding and hopefully you get strength from your family and friends. You will make it thru this to be more of a role model to many. Blessings!
So kind of you. I had a wobble and will get myself together and try to be strong. There are so many worse off than me.
prayed for ease of treatment and healing for you.
I appreciate it. Thank you.
Sorry to hear this, hang in there, it could be CLL. There are a lot of lymph nodes on the liver, so "masses on the liver" could be lymph nodes, unless you specifically were told they were Not lymph nodes. It's good they are doing a biopsy to verify it actually is your CLL and not potentially something else. They couldeven be benign tumors.
Please try not to assume it's something other than CLL, right now. If you knew you were due to start treatment, or getting close, chances are these are enlarged CLL nodes. I'm one of those that don't get enlarged nodes in my neck/groin/armpit, only internally. Many with enlarged nodes also have the neck/groin/armpit ones. Maybe you are like me, with the only enlarged nodes being deep internal & not seen unless they are scanned. So you don't have the perception of CLL growing, since you don't see any & can't feel them.
FWIW, when I was first getting diagnosed, when it was thought I had some "acute" thing going on, the abdominal CT noted some lesions on my liver that were recommended for biopsy. I never did that, since the "acute leukemia" thing was my main concern. I still have those lesions, I'd never biopsied them back then and since they haven't changed, my doc isn't interested in their biopsy now.
Thank you hope your reply. I wondered whether to leave well alone or find out what they are. Still not entirely sure what to do. I wondered if it would be wise to ask them to monitor them and the mass. My Haematologist doesn’t think they are related to CLL.
Hmmm I'd consider getting a biopsy of the large one, at a minimum. Do you see an actual CLL specialist, is there a nearby one you hematologist might consult with? I'd be asking if any of the enlarged areas could possibly be lymph nodes, which actually might point to CLL.
When I had a recent colonoscopy, I asked my specialist what should be done if there were any suspicious polyps/lesions, what should be done. He said to have the pathologist look to see if they were lymphocytes, and if Yes, send them for Flow Cytometry. I don't know if the similar procedure would be done on any kind of internal tissue, but it seems reasonable that it would.
You may just have benign tumors, butif the doc thinks they need further investigation, maybe consder it. You have a history of multiple cancers, more than me (I had cervical cell changes, my mom had cervical cancer). Better to get it over with & stop worrying, is what I prefer to do. Especially since nowadays, stopping a cancer is getting it in the early stages, like my cervical thing.
And sometimes, things that look "off" aren't concerning. I had another abnormal Pap smear a few years ago, I got a second repeat Pap from a gyn-onc. He said the other "abnormal" was a fluke, everything is fine. It happens.
Thank you, my Haematologist does research into CLL. She doesn’t think it’s CLL related. I’ll go with the flow.
I am thinking of (is it BigDee?) , who has different results from blood versus nodes, and it's all more or less CLL. So who knows if the nodes are some variant of your CLL or not? You won't know until you follow up. Some of us have a mixed sort of thing going on, maybe that's what this is. I find the anxiety of *not knowing* is worse that the "what if's"!
Our wonderful group has covered it all! You are in my prayers❤️. I'm hoping for the best possible outcome for you so you can focus on a gorgeous November wedding for your son. Warmest hugs and God's strength 💪.
Thank you so much. Everyone had been doing kind. I’ll keep everyone updated as soon as I know anything more.
Hi! I am so sorry they found the mass in your abdomen. I’m 44 F and they found one in mine that atleast explains some of the pain on that side. It’s on my remaining ovary that was clear 2 years ago (I had a full hysterectomy except that one healthy ovary). And they found a couple of masses and cysts, around the size of yours. After the CT (without contrast since I’m allergic) they did 2 MRI’s and ultrasound, and they still can’t rule out if benign or malignancy. I needed to start treatment for CLL in December, so the ob oncologist said it was ok to wait if we image it every 6 weeks, as the earliest my hematologist could approve surgery was if we stopped after cycle 3-4 then it would be ok restart after healed. My scan is next week and then we decide. If same size, we just keep checking and waiting. If no change, they will remove the mass after I finish my Obinutuzumab cycles. But they just added 2 additional infusions for after cycle 6 because it’s taking longer to treat with me. So looks like mid to late summer to remove it and do pathology. I also had several nodules in my lungs, not sure what they are but most likely CLL cell clusters. We know I have a mass or lymph nodes obstructing one of my kidney’s, but they can’t find it because I can’t do CT contrast, 2 radiologists see different things, but we know I have a new hydronephrosis on my kidney, so the hope is the treatment will shrink and improve whatever is causing the obstruction. I have a PET Scan finally scheduled for April 7, so maybe we will finally get answers on what else or has been going on. Or maybe it will be good news and the treatment is shrinking everything including my other neck and chest lymph tumors. 🤷♀️ As of now they think it’s all CLL related, unless upcoming scans and pathology proves otherwise.
How long ago did you have breast cancer? Do you know if your spleen look inflamed at all? If the mass is on your ovary, I would request that to be removed if possible asap especially with your history of breast cancer.
Because you have been through so much already, I get this sucks so bad. But you are definitely a fighter and have fought through so much, you for sure got this too!!! But give yourself time to be upset and feel this, deal with it, then get prepared for the amazing wedding for your son! He needs you, and you will be there no matter what this is, and be there for grandkids after, you got this!!! 🙏💕
So many times I know uterine cancer come after breast cancer. I have not had breast cancer but did have endometrial carcinoma almost 3 years ago luckily stage 1 and only needed full hysterectomy. I wanted everything out. I think your advice is sound about the ovary. I would not take chances.
Thank you for your advice.
Well we’re definitely cheering for your strength to withstand whatever they find. I just pray they were able to lessen your pain. Your health journey has been rocky to say the least but you are definitely a fighter & have won every one of them before!!! 🙏🏾
Thank you for your support and kind words. Let’s hope I win this one.
Sending courage and strength to you. The waiting is so hard. 🤞
It’s the hardest part.
prayers to you ! Stay strong and keep us posted !
Will do, thank you.
So many wonderful supportive and informative replies. Your post has touched us all.
What I always find useful is what in the therapy I was trained in, we call the 'both/and'.
This is holding the worst case scenario AND the best case scenario both at the same time, until you know. Either are possible of course, as well as in between outcomes.
Of course this is not easy, but I find if I am able to do this if I am concerned about something, it helps to calm me, to free me.
I hope this makes sense....... I am aware that position can feel more loaded than another.
Eleanor
Thank you for your wise words. We have to try to be strong and carry on.
For me, what is 'strong' is paradoxically to admit as you have done, when we are not strong, when we are afraid.
For me that also helps us to have hope for what may be okay--to carry on with what is possible.
Not sure if this makes sense.....
👍🏻
Bedlam. You make that #1 on your list of priorities . My first one was reaching my 70th birthday because I didn't want 69 to be on my headstone 🙄. As time went on and I had trouble breathing and thought great, now I have asthma ! and after a special scan they found embolisms all throughout my body, with the biggest one wedged in my lungs against the heart artery - 3 hr surgery was a failure, and I use oxygen if needed. But I got through it. Seems as cancer breaks down it causes embolisms! I reached my 70th birthday. Check✅. I found having that list and checking it off while things were going wrong made me stronger because I realized I was accomplishing things I didn't think I would. I,too, have probably a dozen major diseases, illnesses, whatever you want to call them. In and out of hospitals the most over the last two years. Kept adding to my ✅ list. There! Another thing ✅ off. Staying focused on what needs to be done is the best way to stay strong. Your son is getting married in November...you make that #1 on your ✅ list ❤️! Seeing my then 5 yr old beloved grandson again (with bald head and picc lines hanging out of my arm) was wonderful 🥰🥰🥰 ✅. As you get more answers it gets you that much closer to your goal of getting through everything. If it's cancer. You'll get through it because you have an important #1 on your ✅ list. You'll deal with it but ain't nothing going to stop you from being mother of the groom at his wedding 😁🥰. Collect prayers and prayer groups (never say no to one!) and use them as needed. You WILL get through this 🤜🏻🤛🏻🫶🏻😍😍.
I'm here if you need support and love
Sending you prayers
Kerry aka 🦄
How inspirational. I just love your goals. I was pleased when I reached my 70th with my son in the Outer Hebrides. My Father died at 54 from pancreatic cancer, my brother at 64 of throat cancer my Mother 74 had a stoma bag and died. So, I reach 74 this November. I want to get to my son’s Wedding, as I said there are people out there going through so much more than me. You are one of them. I had a wobble, I have taken inspiration from all of you on this site. You have made me into a fighter. Thank you. ❤️
You have been a fighter lol. You just needed to be reminded by all these fabulous people here 🥰🥰🦄
You are so right. I expect we all get to the stage where we have had enough. We just have to keep going. 🤗
❤️😊🥰 you got it !
Wow, you are incredible. You are an odds beater!
no way girl your giving up, think positive and you sorted the rest out this is just another issue to fix and that you will, best regards tony
Thank you. 👍🏻
Prayers and good thoughts for strength and good reports.
Thank you. 👍🏻
I would add a caution to Docs finding nodules, known lymph nodes and masses when you have CLL/SLL.SURGEONS WILL LOOK AT THOSE ITEMS AND IF THEY ARE LARGE, OR HAVE GROWN. THINK THEY NEED BIOPSYS AND OR REMOVAL.
A CLL Specialist sent me to be followed by a thoracic oncology surgeon at Duke. For swollen things in my torso and lungs. After two years of them following lungs nodules and others in upper torso. Another Surgeon in the practice. Came to the conclusion that they had grown and needed to come out. Sent me upstairs for presurgery lung testing. Since they wanted to operate the next week. Well after that shocking news I read the days ct scan radiology report on the way home. The latest radiology report noted no change in size and stable for two years. Good thing I always check my radiology reports or I would be missing parts of my of my lungs right now. Since the surgeon walked into my exam room. Introduced himself, handed me some ct scan pics and said nodules had grown and we need to remove them. Two seperate surgeries over 3 weeks with lots of risk and days of recovery in hospital at minimum. Needless to say I called and cancelled surgery for the next week.
Fast forward after treatment. My first scan showed that all swollen nodules had shrunk to half the size they were. Many of these nodules, lymph nodes can get large but don't need risky surgery, just treatment if they are causing problems.
So before you sign up for any invasive treatment, double check the reason for that invasive diagnosis. A mass is suspicious, but it may be benign. Or it may me a lymph node or nodule that has just grown due to the abundance of CLL cells residing in them.
Like mine, if thats the case treatment will shrink them.
Foog for thought.
All the best to you.
Have taken note of what you have said. My Haematologist didn’t think they were CLL related so I should go ahead with the biopsies. I will ask the questions you have highlighted. I think sometimes we go with the flow too easily.
You will make it to November. Its totally doable and only 8 months away.
Last year, February 2024, my husband was hit with a secondary cancer (stage iv colorectal cancer with metastases on liver, lymph, and peritoneum) and today he is in complete remission! I instructed my husband to combine an MCT (medium-chain triglyceride) ketogenic diet along side his treatment and all cancer disappeared in 12 weeks. Yes, he had the advantage of me (a live-in nutritionist) but there are many books that explain how this works such as Miriam Kalamian's book "Keto for Cancer, Ketogenic Metabolic Therapy as a Targeted Nutritional Strategy". The most important part of my husband's journey was that he had no thoughts of leaving, only living on.
You didn’t mention what treatment he had. I do try to be careful what I eat and Neil enlightened me to the use of supplements. I did have a wobble but am definitely going to fight this.
You go girl! My husband had immunotherapy. He was slated for surgery after 5 months of treatment but within one month he felt so good his medical team decided to move up his surgery date. But when they did the pre-surgery MRI and PET scan, all the cancer was gone! Surgeries cancelled.
A ketogenic diet is more than watching what you eat. It is nutritional therapy based on a low carbohydrate intake combined with higher fat intake and moderate protein intake. It helps with inflammation, diabetes, mental health, and as an adjunct to cancer therapy (although today some people have and are using it as the sole form of treatment). You can learn how to do this diet at home if you use a good book to guide you or you can get guidance from a board certified nutritionist. For it to work at it's best you should do daily blood testing . We used and still use the Ketomojo, a home blood testing kit that diabetics use, which you can buy online in the UK. The science behind the ketogenic diet has been used as far back as the early 1900s for epileptics and has been scientifically proven again in the 20's.
Before you do any planning you need a definitive diagnosis. Regardless, this diet can be beneficial for people who have or are at high risk of CVD, diabetes, and cancer. Please note that none of these chronic conditions are the focus of this forum. Therefore, if you would like more information you should message me privately so as to stay within the confines of this discussion forum.
CLL with LIVER Infiltration
6 months post mini Allo transplant update
Come and Go
Chemo 
